AMMF’s Year in Review – highlights of 2018

The last year has been an exceptionally busy year for AMMF, and the following are just some of the highlights:

AMMF’s Cholangiocarcinoma Conference

International Cholangiocarcinoma Workshop

Data Analysis Project – and a new data analyst

Research funding awarded

Cholangiocarcinoma-UK

AMMF’s Cholangiocarcinoma Conference

AMMF’s Cholangiocarcinoma Conference 2018

We welcomed a record number of delegates from across the world to our annual Cholangiocarcinoma Conference on 10 May 2018, at the Radisson Blu Hotel, in Stansted, Essex, UK.

This was a key platform for international experts to share news and information about clinical studies and latest research, cholangiocarcinoma was discussed from a multidisciplinary perspective by consultants, specialists, scientists and researchers. Updates were presented on issues ranging from surgery to the latest clinical trials and targeted therapies, including the use of radiation therapy.

As well as the scientific and medical presentations in the main hall, there were inspirational presentations from patient speakers who shared their own personal experiences. And there were three break-out presentations specifically for patients and carers, and an opportunity to sign up to donate to the Cholangiocarcinoma Biobank.

International Cholangiocarcinoma Workshop

Throughout 2018 AMMF has been working with Scientific Education Support (SES), towards forming a globally united voice to address the unmet needs in cholangiocarcinoma.

International Cholangiocarcinoma Workshop

To this end, on 25th September 2018, AMMF held an international workshop, at which 30 cholangiocarcinoma representatives from around the world met to uncover and discuss current challenges and unmet needs. The aim of the workshop was to establish a united voice through international collaboration, in order to drive awareness and education globally and to address the current challenges in cholangiocarcinoma.

During the workshop, the objectives of a coalition to represent the voice of cholangiocarcinoma were successfully identified. The foundations for a vision and mission for a Global Cholangiocarcinoma Alliance (GCA) were developed which, in turn, allowed for communication strategies and opportunities to be identified with a plan to deliver this voice on a global scale.

The ongoing work has now been divided into the following phases, which will be worked through over the coming year:

Data Analysis – and AMMF’s new data analyst

At AMMF we have long considered one of the reasons why there is so little awareness of this disease, and so little progress, is the lack of robust data to support what we believe is happening in terms of increased incidence, and increased numbers of young adults being diagnosed.

We see this as a major problem because robust data are essential to drive policy, to encourage research funding, to stimulate interest, and so much more. Without robust data it’s all just anecdote and opinion – and in the medical world, and certainly in the NHS, opinions don’t drive policy nor fund research. This data area is one that AMMF and a group of like-minded concerned specialists, has worked over the last couple of years to address.

Earlier in 2018, AMMF and the group worked on and finalised a cholangiocarcinoma project proposal which was submitted to NCRAS (the National Cancer Registration and Analysis Service). This was accepted without change – and AMMF has now appointed an analyst who will be embedded with NCRAS for a year to work on this project – pulling out the most up to date data, including incidence and mortality, age/gender breakdown, routes to diagnosis, treatments received, regional variation, and more.

If all goes well that could answer many of the questions we currently have relating to the epidemiological trends of CCA. Obviously, the analyst can only work with the existing data, but we hope for at least some useful and robust data, at last.

Research funding awards

AMMF awarded £350,000 in the 2018 funding round

AMMF is passionate about supporting talented and dedicated cholangiocarcinoma research teams and to date has awarded well over £1m (one million pounds sterling) in grants to support cholangiocarcinoma research at many of the UK’s leading research institutions, and internationally.

In the 2018 grant funding round, AMMF awarded £350,000 to leading institutions both in Europe and internationally, including:

The AMMF Cholangiocarcinoma Scholarship – the first of a new 3-year PhD scholarship award

A joint international award – AMMF joined forces with three fellow cholangiocarcinoma organizations in an international collaboration to provide a $50,000 young investigator grant in cholangiocarcinoma through the Conquer Cancer Foundation of ASCO.

For more information on these, and all AMMF’s 2018 grant awards, click here

Cholangiocarcinoma-UK

As the incidence of CCA continues to increase year on year, so has the recognition of the need for a dedicated pan-specialty group to address the unmet needs of this disease throughout the UK. Under the umbrella of BASL (British Association for the Study of the Liver) several Special Interest Groups have been set up including, for the first time, one dedicated to CCA – Cholangiocarcinoma-UK.

CCA-UK, a national ‘specialist interest group’

This group’s mission statement is:

“Cholangiocarcinoma-UK is a multi-disciplinary group of clinicians, scientists and patient advocates whose purpose is to facilitate collaborative research, enhance service development and raise the awareness of cholangiocarcinoma.”

Professor Shahid A Khan is the working chair of Cholangiocarcinoma-UK, AMMF’s Helen Morement has been on the committee since the inception of this new group, and is currently serving on the Executive Committee along with Professor Khan, Professor Derek Manas and Professor John Bridgewater.

Comment from Helen Morement – CEO, AMMF

With cholangiocarcinoma now more firmly on the agenda than ever before, AMMF looks forward to 2019 with hope for a better future for all those diagnosed with this disease – that better recognition of this disease is achieved, along with new insights into early and correct diagnosis, as well as the development of new and improved drugs and treatments.

We are so grateful to all those who have supported us during 2018, and without whom our work would not be possible. As we now move in to a New Year, with your ongoing support, we can and we will make a difference for all those diagnosed with cholangiocarcinoma.